Family Challenges Posed By Fragile X Syndrome

A post that has nothing to do with index cards….

Rebecca Feinstein and I interviewed 39 family caregivers of adults living with intellectual disabilities arising from fragile X syndrome. I presented some of our results at the annual meeting of the McLean Center for Clinical Medical Ethics here at the University of Chicago. The sound quality of this 20-minute presentation could be a little better. It conveys some important challenges that individuals and families deal with every day. These interviews underscore how gaps in our social assistance systems impose high costs on many people.

These interviews also brought out one issue that is often overlooked: The safety issues confronting many family caregivers, particularly those caring for young men with a variety of intellectual or behavioral diagnoses. We discuss many other issues, too. So I don’t want to overstate the magnitude of the problem or have it overshadow more familiar concerns. I should add that our family not faced this issue in our own caregiving challenges. It is part of the mix.

This morning’s New York Times includes an excellent essay by my SSA colleague Matt Epperson on police encounters with individuals who are experiencing severe mental illness. Issues of intellectual disability need to be part of this conversation. It is often left out.

[Cross-posted at The Reality-Based Community]

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Harold Pollack

Harold Pollack is the Helen Ross Professor at the School of Social Service Administration at the University of Chicago.